Wanting to care for your child is a basic instinct for most mothers.  All the more so when that child has a chronic condition, like the son of today’s guest—a Wisconsin mother who asked that we not use her last name.  Carol’s adult son has Multiple Sclerosis (MS), but he refuses to let Carol care for him.  She says their relationship wasn’t always strained.  On the show, Carol reflects on how she and her son arrived at this impasse and she tells us how she navigates her relationship with her son now.  She shares her concerns for her son’s future, and tells us why she still fundraises for MS but is more invested in advocating for criminal justice reform in  Wisconsin.  Carol is the President of MOSES (Madison Organizing in Strength, Equality and Solidarity).

Subscribe to The Agewyz Podcast: iTunes
Got a story to share? Email us any time at jana@agewyz.com

Music: “L’Etoile danse (Pt. 1)” and “Blind” by Meydan | CC BY | Free Music Archive

INTERVIEW TRANSCRIPT:

[INTRO SOUND BITE, SHOW INTRO AND SPONSOR MESSAGE]

JANA:  Most of us welcome at least a little bit of tender loving care when we’re feeling down or under the weather. But what happens when an individual refuses to be cared for by a family member and that individual has a chronic condition? That’s the dilemma facing today’s guest. Her name is Carol, and at her request we’re not going to use her last name. Carol’s son has MS, but he refuses to let his mother care for him.  On today’s show, we’re going to talk about how the two arrived at this impasse and how Carol navigates her relationship with her son now.  Carol is a retired attorney, she’s an activist, a grandmother and what you might call an on-again off-again, caregiver for her son. Carol, welcome to The Agewyz Podcast.

CAROL:  Thank you.

JANA:  So for people who don’t know– and there will be people listening to this who really don’t know a lot about MS — can you describe what MS is? And how does it manifest?

CAROL:  MS stands for Multiple Sclerosis, and it’s believed to be a self-immunization problem of the body attacking itself.  And it’s a challenging condition because it can attack anywhere at any part of the body and you don’t know what that’s going to be.  And most people who are diagnosed with MS start out being relapsing remitting MS, which means they may have an attack that lasts for a day or a week or a month or six months, and then remit.  And things kind of go back to normal, but you know, not quite totally.  And this might go on for 10, 20, 30 years.  But very often, not always, but very often it then becomes progressive MS, which rather than relapsing and remitting is a slow decline in your abilities over time. So if I just give you an example, usually it’s fatigue and weakness it starts out.  Sometimes, like with my son, he woke up one morning in Portland where he was living with a friend of mine, and couldn’t get out of bed.

CAROL:  His legs didn’t function. It was that quick. And in a way he was lucky because he was taken to the hospital and he got a diagnosis that day. From the brain scans, you can see the actual scars on the tissue. And at least he knew early on what it was.  Some people go on for years before it can be diagnosed.  Things start happening to your body and you don’t know what it is.  Some people wake up and are blind one or both eyes.  You know, most often is– walking becomes the problem, but it can be any part of your nervous system can develop sclerosis or scars where the myelin is, which surrounds– is a sheath for the nerves– gets destroyed and in one or more spots.  And for instance, it can affect your ability to walk, to talk, to see– to think… a lot of people have significant cognitive impairment eventually from MS and fatigue.  I mean, it’s just enormous fatigue so that you can’t get out of your bed on some days.  And it’s usually– I mean there is no cure for it.  There have been significant increases in treatments for it that lessen the symptoms, but you know, there’s no cure for the disease thus far.

JANA:  And what are some of the misconceptions that people have about MS?  One of the ones that I had was that you can die from MS, but in fact you don’t die from MS.  You can from complications.  Is that right?

CAROL:  Well, it depends on how you want to define it. I mean the life expectancy of a person with MS is now pretty long… you know, like 65 years or something.  And when you say they die of the complication, that’s true.  The complication may be that they can no longer breathe.  So you can make the distinction that they died of a complication of MS.  But an attack on your lungs is to me, you know, the same as dying of MS. Although now with treatment, many fewer people die of MS in their youth. I don’t think that my misconceptions or pre-misconceptions– because this happened when my son was only 25… he had his first, clearly episode.  He may have had some earlier, but this was his first one.  And I immediately did a lot of research.  But one of the hardest things is that people don’t understand what MS is.  And if they see someone walking fine and working, they may not understand that that person may be bedridden several months out of the year, when that makes it very hard to plan, you know, to figure out what to do.

CAROL:  And then of course a lot of the symptoms don’t show.  I mean if you’re just experiencing enormous fatigue, you know, and you start losing social contact with people because you simply cannot keep yourself awake beyond seven or eight o’clock, you know, that isn’t obvious, it just– these things are going on. And then of course with cognitive impairment too, people often don’t understand.  So it makes it unusual, that someone can seem perfectly fine and then be very, very impacted by the disease, you know, a week later or a day later, a month later. So the fact that it relapses and remits confuses people, I think a lot.   They can see you looking just fine, and have no idea what you’re dealing with.

JANA:  Is it one of those diseases that is misdiagnosed often? And what other diagnoses have been given? You said your son got his diagnosis right away, but it sounds like there may be occasions when people are diagnosed with something completely different and it’s later found to be MS.

CAROL:  I don’t think now, anymore, it’s a matter of misdiagnosis.  I think it’s more often that people aren’t diagnosed because, you know, they may have a lack of balance… dizziness spells, you know, the fatigue.  Fatigue is always a very hard issue to diagnose.  And I know in the past, certainly, people went on for many years not understanding what was going on. I honestly don’t know the stage of the diagnosis now, whether people are alerted enough to the nature of the disease.  And it was just discovered a couple of years ago that there’s a pediatric form of MS, which was never known.  And when we started to look back, you know, my son could think of a few episodes that were sort of inexplicable, of enormous fatigue, like backpacking with his friends at the age of 18 or something like that, you know, when he’s in good shape and he couldn’t understand what was going on. So it’s more likely to be a misdiagnosis rather than wrongly diagnosed.

JANA:  You said he was 25 when he was diagnosed.  What was going on in your life at that time?  And what was going on in his life?

CAROL:  He at the time was doing film work up in Portland, just sort of getting started with his life– you know, had graduated from college and moved to Portland and was starting his life as he foresaw it. And I was working full time as a lawyer–

JANA:  –in Wisconsin?

CAROL:  Yeah, in Madison, Wisconsin.  And you know, we have no MS… and we had no MS in the family prior to this time. And I really didn’t know anything about it until I was in the middle of a deposition and I got a call saying the neurologist from the hospital where your son is at wants to talk to you. And I of course didn’t even know he was in a hospital. So that’s how sudden an announcement it was for us.

JANA:  Wow.  So did you fly out?  What happened?

CAROL:  Yup.  I ended the deposition and flew out that afternoon, because at the time I knew nothing other than the fact that my son had brain lesions that were clearly visible on a, I think it was the MRI.  And you know, I, that’s really all I knew. And the words MS were probably uttered, but I didn’t know what it meant. I didn’t know anything about it.

JANA:  And so how did you react, once you got there?

CAROL:  Well, it was, um, it was frightening, but he still was him, you know, other than he couldn’t walk.  And then the doctor, you know, began to educate us in terms of what this means and how unpredictable it is.  And it, you know, it took a lot of researching.  And fortunately there’s a lot of MS in the Upper Midwest, and so we had a good MS society here in Wisconsin, who is used to these calls out of nowhere, you know, my son has MS, what do I need to know?  What do I do? And I relied on them quite a bit.

JANA:  So did you stay out in Portland? What happened?

CAROL:  No. He was gradually getting better.  I was maybe out there a week.  And like I say, he was perfectly normal, you know, other than he couldn’t walk, and then that slowly improved. And then at the time I was very impressed with how much wisdom and calmness he had in terms of dealing with it. He didn’t panic or anything. And you know, a month later he was back playing soccer and dancing.

JANA:  Wow.

CAROL:  You know?  Yeah, yeah. That’s that stage where you can go back and do most of your normal things.

JANA:  Well, I wonder if you could just sort of speak a little bit about the course of his disease.  And how old is he now?

CAROL:  He’s 50 now, so it’s been 25 years.

JANA:  Wow.  So maybe if you could just take us through the course of the disease, and actually talk a little bit about what sort of care, if any, you provided for him in the beginning.

CAROL:  When he was relapsing remitting, one of his early very bad episodes, he did come back home and he described it as his head was filled with cement.  He couldn’t see well, he couldn’t think well. So that episode hit his brain more than it did his legs, and enormous fatigue and uh, I think he was home with us for about a month. And you know, the same thing– it very gradually got better. And then when he felt good again, he flew back to Portland and picked up his life.

JANA:  And he welcomed your care at that point?

CAROL:   Yeah, yeah, he did seem very open.  I mean, he knew something was really wrong.  And then eventually they got to a point where, when the episodes come frequently… begin coming more frequently– I mean, I don’t remember the dates or how frequent things were. Let’s say they were, three or four episodes a year. And then the next year there might be one or two more. And then there might be one or two more.  And then they eventually had him come in for IVs– steroid IVs– that kind of help the body get back to normal faster. So that was the main treatment he relied upon for a while.  And in most of those cases I did not rush out there, kind of thing.  And then gradually it got worse and worse. He still continued working, but it was very hard and he actually got fired from the job he had because he needed to take a nap in the middle of the day.

CAROL:  He wanted to lie down in his office and take a nap. He was fired for that.  Well, fired a week after he asked for that accommodation.  And then finally as things were getting harder for the family out there, and then they were going to have a second child, I strongly urged them to move back either here to Madison so that I could be of some support, or move to his wife’s home in Michigan, you know, just get some family around you because they had no family at all. By this time they were in Seattle and there was no family for support.

JANA:  That’s tough.

CAROL:  Yeah.

JANA:  And was she working? His wife?

CAROL:  Yeah, they were both working except for… I’m a little confused about whether Jonathan got another job– yes, he did get another job after losing the other one.

JANA:  Jonathan is your son?

CAROL:   Yes.

JANA:  And so how is his health now? And where do they live?

CAROL:  They live in Madison now.

JANA:  Okay, so they’re back in Madison.

CAROL:  Yes.  While his wife was pregnant with their second son, they did agree that it made sense to come back somewhere. They’re divorced now, but he lives in Madison and recently they moved, and now he’s only about 10 minutes away from me. And until– there’s a new drug that’s out, I mean that’s one of the positive things.  When he first was diagnosed at the very same time, they had just come up with their first daily injectable that was supposed to modify the number of episodes and the difficulty of the episodes.  So there again, he was lucky. He started those injections immediately and he’d been on those injections up until about two years ago.  And by that point he was– pretty much had to use a wheelchair all the time, including in his apartment.  He had almost no short-term memory.  And before he left Portland, I think they, he’d been tested and he was down to 30% average memory for short-term memory.

CAROL:  And that just declined kind of consistently.  And I remember one time– to get an idea of it– I just said, how was your weekend?  And he said, I have no memory of my weekend.  Let me look on my phone to see what I did this weekend.  And he was very adept at technology, and so he really used his phone and that helped him significantly.  And then I would say various functions in his body were shut down, still are shut down.  And you know, because it can attack anything in your body, you know, it’s just one system after another that begins to fail. And then he got on a new drug about two years ago now, one of the most exciting drugs that had been discovered in a long time.  And that overall improved him enough so he could kind of walk in his apartment if he held onto something, you know, the walls or the counters or something.  And that little bit of help was significant.  And so he’s doing a little better than he was two years ago.

JANA:  Is he working?  Is he able to?

CAROL:  No, he can’t.  He can’t work.  He’s on Social Security.  When they moved here he tried, he was very excited about it. He was in education, he was a teacher, and he was very excited that he got a curriculum project for afterschool care, you know, trying to build up the academic content, if you will, of afterschool care. And it was so challenging for him because he couldn’t remember what he’d written on it.  You know, it was like every day he was starting a project anew.  I think that was the first time we realized it was really affecting him, cognitively, that he could not do the mental work anymore.  So he got Social Security relatively soon, which was good.  One of the common symptoms of MS is spasms, bodily spasms. And they can go on for hours. If you imagine when you get a Charlie horse in your leg and having that going on for hours with your whole body.  So he eventually had surgery to install a Baclofen pump on his spine, and that was supposed to resolve that issue, but it hasn’t. So maybe once every month or two he has total body spasms, which really destroy him for a few days. He’s kind of out of commission for a few days.

JANA:  And so who is his primary caregiver now?  Who is caring for him?

CAROL:  Well, he did get a county service.  He has someone come in three hours, three days a week and that has helped.  It certainly has helped with the cleaning. Sometimes it helps with the cooking.  Oh– and then he’s supposed to be daily stretching and exercising, and sometimes the assistant helps there.  But the problem there is that these people are paid so little, and [there’s] enormous turnover. You know, he’s probably on his– I don’t know, 10th 12th caregiver. And his two sons are now older and so they can take better care of themselves.

JANA:  Are they living on their own now, the grown kids?

CAROL:  No, they’re not grown. They’re 12 and 17.

JANA:  12 and 17, okay. And do they live with him?

CAROL: Yeah, they live with him half time, and with their mother half time.

JANA:  Okay.  So he’s got some folks around him at least who know him.

CAROL:  Oh yes.  Yeah.  But I– I mean I feel that he’s quite isolated, because he has lost a lot of friends just because, you know, he can’t act like most friends do.  You know, he can’t go off on a long day hiking or canoeing or anything like that.  He very rarely goes to parties, and it’s just a much more solitary life he has to live because of his lack of energy.

JANA:  And when did things start to change with you, in terms of his refusing your help?

CAROL:  Um, I would say maybe 10 years ago. And he and I were traditionally very close. I was a single parent for a long time with him and we were really good friends. Really got along well. And then I became, it’s very possible I became too intrusive. But I was worried because he kind of had stopped opening mail, and I knew that mail– I mean I could see from it, that it was from his Badger Care, his health care from doctors from, you know, I mean he has a lot of doctors. And I wanted to be someone who opened his non-personal mail and help him keep his life organized because he was threatened with losing health coverage for himself and his sons, because he hadn’t returned the forms. And it became clear that the whole administrative aspect of his life– and this is someone who was incredibly intelligent– it was becoming overwhelming. And that’s the first thing that I remember being really: you can’t live like this. You know, there’s too much at risk for you not to be opening your mail.  And I recall him really resenting that and you know, I suggested alternatives if not me, but somebody to assist him in that way.  And I don’t think he’s ever taken that up. And I literally don’t know anymore if he has a system that really allows him to maintain the administrative stuff.

JANA:  People often refuse help because they don’t want to be a burden and they feel guilty for even needing help.  What’s your view on why Jonathan refuses your help?

CAROL:  He has come to be very defensive around me, and he thinks that I’m always criticizing him. And I feel like I walk on eggshells around him, so I don’tdo or say anything wrong. And I think there’s a level at which he still hasn’t dealt with the anger he holds for having this happen to his life.  You know, at the age of 25. And you know, being well-educated, having a Masters… just starting off in your career. And I think my offering to help reminds him of, you know, all he can’t do. And that’s my sense of it. He has a lot of anger, and he’s had a lot of counseling about this.  And he wasn’t an angry person, you know, as a child or young adult. And this is my speculation, is that there’s just a lot of unresolved things, that he can’t deal with, that he can’t accept, that this is what his whole life has ended up being.

JANA:  That sounds really difficult.  Do you think he’s aware of the effect that this has had on you?  Not In any way to diminish what he’s going through.

CAROL:  Um, I, I don’t know. I can’t figure that out. What happened for several years is that I was constantly moving in and out. For a while it seemed like he was accepting me and you know, I was helping him in a variety of things.  And then we would have some angry interaction, and I’m sure he wouldn’t agree but I have to say, I always felt that most of the anger came from him by far.  And then I would move away because it was very painful, you know, to deal with his anger at me.  Directed right at me.  And I’m really the only adult family caregiver who’s left in his life.  And you know, he’s told me that at one point, years ago, that he felt like, you know, everybody else has abandoned him and I’m the only one that’s still there.  And whether it– I don’t know, at some level if he knows that I’ll never completely leave him, but you know, the resentment, the resistance, the anger was coming forth so often that I just kind of don’t go over to his place very much.  And once in a while I’ll text him and say, you know, I’m at the grocery store. Do you need anything?  Things like that.  And I do a lot of things with his kids.

JANA:  I would imagine it’s especially difficult, as a mother, to have to sort of watch from the sidelines as your son declines.  It must trigger a lot of frustration and sadness.  I was going to ask how do you cope?  And I think probably seeing your grandsons helps.

CAROL:  Yes.  That’s an enormous help.  I love them tremendously. And I feel like, okay, if Jonathan won’t let me help him, then I can do things for his sons and with them, and travel with them, you know, do all the things that he can’t really do with them.  And you know, that really matters a lot to me.  I also began a meditation practice and I joined a Sangha about 10 or so years ago, and that helped me enormously.

JANA:   How do you spell that?

CAROL:  S-A-N-G-H-A

JANA:  I’m not a meditator, as you can tell.

CAROL:  Sure.  Yeah, and it’s just where we go to meditate and be a community together and have Dharma talks and things like that.  I’ve been very serious about that since I’ve started.

JANA:  So that’s your support group.

CAROL:  And I– yeah, yeah.  I honestly am not sure how I would be handling this if I had not– cause I used to be a pretty assertive, high-powered, ready to deal with conflict, you know, as a lawyer… and I retired a little early, and really tried to replace a lot of those aspects of my character with a calmer sense of self because of everything there was to deal with. You know there’s hospitalizations– I think in the last two or three years he’s had some crisis that’s put him in the hospital and, you know, I have to be there. I can’t imagine him trying to deal with it on his own.  And some of the stays have been really, really difficult, in part I think because of ignorance on a general ward about what MS is and what happens when an MS patient starts having spasms.  And you know, you do something immediately to take care of it as opposed to ignore it.

CAROL:  We talk once in a while.  You know, he comes over once in a while, but very rarely.  And I never go over there without calling first and saying, would this work if I stopped by after I finished my grocery shopping?  Or do you just want to talk?  And I just seem to cause him so much pain that it’s better for me just to be removed from him.  Always there, but removed from him. And I assume that will change if he, again, declines, deteriorates or… yeah, when the boys leave home… and you know, it’s still a long haul that we have to go through together.

JANA: Do you talk about this with your grandsons when you’re with them?

CAROL: Yes.  I have started talking with, especially the oldest one, who is also at times baffled at the quick anger at what to him– of course he’s a teenager, but what to him seems like a minor thing.  And yeah, I mean we’ve talked about the challenges of them living with him, and why they have to develop greater kindness and compassion than most kids their age. Because they’re dealing with a very difficult situation too.  I mean Jonathan was a tremendous father, just tremendous when he could.  One of the best fathers I had ever seen.  And so it’s also painful for me to see him as angry as he is sometimes, usually toward me, but sometimes toward them, you know, in ways that seem inexplicable.  Like, why would that prompt so much anger?  What is going on?  So.

JANA:  Is he getting counseling now?

CAROL:  Well, he’s certainly gotten counseling periodically.  And I did suggest… oh, I guess it was right before the holidays, that he and I tried to do some counseling together.  And I know he’s had a counselor who he liked, and I said, you know, I would be happy to go to him if that is something you would want to do.  And sort of surprisingly, he said, yeah, we should do that.  And it hasn’t happened. He’s the one who would have to set it up, and it hasn’t happened.  So I don’t know if that means anything, or if he’s simply forgotten because he forgets so many things.  It’s a very strange mental world to live in when you have a hard time remembering what you did or said, or anything like that.

JANA:  Yeah, and he’s still young.  I mean, 50 is young, to me.

CAROL:  Yeah.  No, he is still very young in manner and looks great.  I often tell people, if Jonathan is sitting down when you come over, and he’s having a good day, and he doesn’t have to remember anything– if he can just spontaneously chat with you, you’d never know there’s anything wrong with him.

JANA:  Is his wife involved in his care at all?  His ex-wife, I should say.

CAROL:    No, not at all.  Great deal of conflict there.

JANA:  Okay.  Carol, do you think differently about your son because he has MS?  Does it color your thinking?  Do you think of him as a sick person?

CAROL:  Yeah, I do.  I think of him as a person with a lot of needs and a painful life he has to lead, about which I can do almost nothing. I mean that’s…

JANA:  That must be so hard.

CAROL:  Really, it is.  I mean, I’m a very strong person and resilient, and I can handle crises, and my larger family has used me in that way. And that may have prompted my being too intrusive because I’m a problem solver, you know, I don’t kind of let things slide.  I try to make them better.  And I wouldn’t be surprised if I am responsible for some of the antagonism, just because I was trying to help or make things smoother for the family.  But you know, I have to tuck it away.  Otherwise I think I would just collapse with grief.  So I grit my teeth and… yeah, I certainly do think of him as a sick person.  I mean, I’ve seen him writhing in pain on the floor in the hospital and you know, his life being so limited in terms of what we all thought his life would be, both him and me.

CAROL:  I happened to have a friend who has two mentally disabled sons who were high achievers until they hit 20, 25.  She is deep practitioner, and she and I talk often of, you know, how do you maintain your own mental health and balance in front of this picture of your son deteriorating day by day?  And it’s a very fine line to walk.  And I think it’s natural that we fall off one side or another periodically, either being too attentive– oh here, let me push your wheelchair… we’re outside somewhere… Let me push your wheelchair… [and he’ll say] leave it alone, I’d rather do it myself.  You know, thinking you’re relieving someone who has a very limited amount of energy to get through a day.  You know, he probably has three hours at the most to do what we have to get done every day. I mean he can’t do a lot of the, like running in for groceries and things like that.

CAROL:  So you know, I do things that are well-intentioned and he resents them.  And I imagine he resents them in part because it’s treating him like he’s an invalid. And then other times I just move away.  I can’t deal with this, you know, it’s too painful.  He doesn’t want me in his life. So, I’ll just be there when the emergency arrives and let him live his restricted life.  I’ve never been able to find the balance in the last 10 years, let’s put it that way.  Long-term.  We can do it for maybe a month or two months or something like that, and then there’s a rejection of me.  A pretty broad rejection of me.

JANA:  And does he have siblings?

CAROL:  He does have one brother who lives about three hours away, and they’ve gotten closer over the years.  But Jonathan was actually out of the house when his brother arrived.  So they never lived together like brothers.  But Jesse and his wife are very concerned and attentive to Jonathan, even though they’re very different people.  You know, the two brothers are very different.

JANA:  Does Jonathan welcome his help?  I know that they’re not around as much, but…

CAROL:  I think so. I mean he seems to take his brother’s help much easier than he does mine.  And whenever they come down and Jonathan’s not here yet, I tend to say, call Jonathan, see if you can go pick him up.  I try to stay out of that role as much as I can– and bring him over here… And yeah, they interact quite a bit. Yeah, he does not seem to reject help from them.  That’s a good point, that I had never been very conscious of before.

JANA:  Well that must make you feel a little bit better, that at least he’s willing to accept some help from a family member.

CAROL:  Yeah.

JANA:  It’s got to be so painful though, for you.

CAROL:  We all have some kind of suffering to deal with, you know, and… and if we’re smart, we find the best way to deal with it.  But that’s not easy.

JANA:  It sure isn’t.  I know that you just got back from a respite trip to San Francisco. How did that help you?

CAROL:  Oh gosh, it was wonderful. I was out there for two weeks, half the time with my extended family and half the time with my best friend.  I’m good at going on vacations and forgetting what I leave behind.  I really kind of walk out of my life in many ways, because I need it and because it’s not right in front of me. And I figure my being able to be away is really important, to be able to do what I need to do when I come back.  And so I’m pretty good at compartmentalizing: okay, this is a vacation and I’m going to forget about everything that’s waiting at home, everything that needs doing, everything that’s a problem, and just try to enjoy the moment.  And I’m getting better at that.  So it was, it was wonderful. The minute I hit my friend’s house, I slept.  I have a lot of problems with insomnia.  I slept every night there with no problem.  It was like, okay, put all that behind for a little while.  And then by the end of the vacation it starts eating its way back.  And then, you know, I know it’s all out there waiting for me.

JANA:  Did the trip shift your perspective on your situation at all?  Sometimes that does help, I mean even if it’s short-lived.

CAROL:  Yeah, yeah.  For number of reasons.  I was able to talk to my friend and family, and there was a big celebration with my family.  And I spent a lot of time talking to my grandnieces who had just finished up their first semester of college, and that was exciting.  And so it just reminded me, it reminded me both of the support that I have, you know, with other people, that I’m very lucky to have. Every time I see my family I value them more.  And just being around and laughing, and I mean just living that life, is very good for me.  It really refreshes me so much.  And I know enough to take vacations, you know, I do that.

JANA:  I’m wondering if you have learned to let go of certain expectations.  And I was going to ask you how you think you’ve changed.

CAROL:  Well, you know, this also overlapped a lot with my meditation practice, so I can’t always sort things out. I mean, the irony is… is that I’m a great planner and yet here’s something that I totally can’t plan for, and that I can’t solve.  I can ease a few things here and there, but I can’t solve– I can’t cure his MS, and I can’t even keep him from resenting me. So it certainly has humbled me.  It has helped me live in the present and not always be planning what’s next.  Because I don’t know, and I can’t control it anyway.  I love his children so deeply, and I mean if they had stayed out, you know, in Seattle, I wouldn’t have been as close to them.  And so in a way, they’ve been a tremendous gift, to have them here and to develop very strong relationships with them, because I have been in their lives a lot too.

CAROL:  I mean, I took care of the youngest two days a week when he was born, and then I’ve taken them both traveling, because I want them to not be totally denied experiences because of their dad’s MS.  So you know, there’s a lot of gifts in there too.  A lot of things to be grateful for.  I worry a lot about what happens after I die, and I don’t know.  You know, I do what I can in terms of wills and trusts and things like that.  But at some point, I mean I have family and friends who I hope will be there for him.

JANA:  I know that you’re active in the MS community.  Tell us a little bit about your advocacy work.

CAROL:  Actually, that is not the community that I am a very vigorous advocate in.

JANA:  Really?  Okay.

CAROL: Yeah.  And I always kind of wondered about that, and I felt it was too close.  I mean, I do the MS walks, I’ve raised a lot of money for them.  But it was like, I can’t live only in this world, because it’s so painful for me.  So personal.  And so what I am a very active advocate is… for, mass incarceration in Wisconsin and the racial implications of it.

JANA:   Wow.  What kind of law did you practice?

CAROL:  I didn’t do criminal law, I’ll tell you that.  I did primarily employment law, union side and employee side.  And I eventually went in-house at a union insurance trust and worked there before I retired.  But I never did any kind of criminal, other than the one required course.  And now I really threw myself into creating this organization here in Madison called MOSES, which works at the public policy level.  You know, not the direct service level as much as the public policy level.  This is a really bad state for incarceration.

JANA:  MOSES, it’s called?

CAROL:  Yeah.  So it stands for Madison Organizing in Strength and Solidarity.  And whether that’s taken up in part to avoid the other painful things in my life, I don’t know.  You know?  But, I think I’m avoiding it.  It may be awful to say, but I didn’t want to live 100% of my life dealing with MS.  And I mean, I am a very strong advocate and have spent many, many hours working against mass incarceration and the racial implications in Wisconsin. And that’s also very important to me.  My younger son is black, and Wisconsin has been voted at least two times, if not more, the worst state in the country to be a black male.

JANA:  That’s disturbing.

CAROL:  Yeah.  Because of the rate of incarceration.  And it may be, you know, thinking back it may be that Jonathan was still doing pretty well when I made this commitment, you know, that I didn’t need to be massively involved.  And like I say, I’ve raised a lot of money in the annual [MS] walk and go to other events, but I’m not there, in there doing the hard work.

JANA:  You’re doing some fundraising.  I mean, that’s important.

CAROL:  Oh, it is.

JANA:  It’s not like– you’re not completely cut off from it.

CAROL:  Yeah, and I really do well with fundraising. You know, I’m fortunate to know a lot of people with good incomes, and given that it’s my son that I’m fundraising for, people are generous.

JANA:  Carol, I want to let you go but I did want to ask, what would you say to your son Jonathan now if he were listening?

CAROL:  [sighs]  I almost can’t say it because I’ll start crying.  I guess that I… I know how much he suffers.  I’m so, so sorry that this happened to him.  That I dearly wish his life could be easier, and you know, I’ll never abandon him.  I will step away when he’s hurt me so badly I can’t be immediate in his life anymore.  I mean, I so hope that someday there’s going to be a cure, but he’s so advanced in terms of where he’s at that I don’t know how much a cure would affect him after 25 years.  You know?  I’m sorry, I went off task.  I wasn’t speaking to him at that point.  We don’t talk about cures and things like that.  You know, he used to meditate some, and I keep thinking if he could find a way to totally accept that this is his lot in life, that he would then have more peace, more calm, more joy in his life if he weren’t fighting it every minute.  But maybe I’m wrong.  Maybe fighting it every minute is what he needs to do.

JANA:  On the other hand, it’s possible he’s not fighting it every minute and he just doesn’t want to show that side to you.

CAROL:  Yeah, that’s, that’s right.

JANA:  Right?

CAROL:  That’s right. Yeah.

JANA:  I mean, he sounds like he’s really a strong person, and so are you. You sound like you’re a really strong person, too, you know?  So…

CAROL:  Yeah, we’re both pretty tough.

JANA:  Yeah.  Well listen, is there anything else you would like to add before we close? I want to let you go.

CAROL:  No… no. Good to talk to you, Jana.

JANA:  Carol, take care of yourself.

CAROL:  And you too. Thanks a lot.

JANA:  Thanks, Carol.

JANA and CAROL: Bye. Bye.