Multiple Sclerosis and Denial/Acceptance

I have to tell you about my love affair with denial. Having had MS for a bunch of years now, I’ve tackled several ongoing issues that the disease has presented: fatigue, bladder and bowel problems, loss of balance, swallowing like a geriatric, and getting out the old cane for relapses when I walk like Charlie Chaplin. These issues I’ve come to accept with a little anguish and a bit of therapy, and it has been a long journey to acceptance since these symptoms often go into remission and try to convince me that I’m living without MS. I’ve also learned in the past few years that my emotional state with MS is never static: because the disease is so unpredictable, it is never safe for me to assume that I have my emotions completely figured out and that they will remain balanced indefinitely. It has taken me about three years to get the emotional situation to a point where I can accept the unknown and live my life not waiting for the other shoe to drop. Multiple sclerosis has a tendency to do this to people and as the disease progresses and more plans are thwarted, it becomes a bigger challenge to remain emotionally balanced. So I’ve recently learned the benefits of dealing with the emotional ramifications of MS with my divine social worker. I cannot express enough how much she’s kept me balanced and grounded on the continuous, unpredictable path that is MS. Just as MS continues, so does the fight to emotionally deal with it, and the methods are never permanent and can change with the course of the disease.

So here is my most recent lesson about denial, and probably one of the hardest to accept: I am trying to come to terms with the fact that I still need some sort of career to make me satisfied, but I have to let go of a choice that will not meet my needs. Anguish! MSers all know the dilemma of wisely picking and choosing what to do and what not to do. Being in relatively good shape despite my MS, I volunteer at my local library system a few short intervals a week. I love the damned library. I’ve worked there a couple of times in the past, but the multiple sclerosis always seems to get in the way. So now I am again in remission and my denial comes creeping back to me: maybe I can still get that library science degree and be a part-time librarian in a few years. Maybe this time it will be different. But the loads of books are still there, the lengthy walks to help patrons are still there, and the Family Medical Leave Act is still a difficult hurdle. So I have come to a practical, satisfying decision and I’m sticking to it: I love science and I want to continue going to school, so I’m going to take some entry-level psychology courses FOR ME. Not for a possible career, but if I continue taking the classes and a career develops, so be it. I love helping people and my local MS Society doesn’t have enough referrals for licensed professional counselors who deal with the issues of chronic illness (I’ve already inquired.) I don’t know if I will ever counsel anyone— on an hourly basis of course— but I took an intro psychology course a few years ago and loved it, and I’ve already gotten the required statistics class out of the way. One of my life goals is to earn a master’s degree. So who knows? Either way, I walk away fulfilled and with new knowledge that I can apply to everyday life. But I have to confess that the denial still lurks in the back of my mind and this choice is not without its pain.

13 comments

  • Good choice. Keep it realistic. I think you would make a good counselor.

  • Jen! Now I see why you understand me so well.

    I am struggling with no longer having a job, but all of my volunteer efforts have failed due to fatigue. I love learning things, also, but have been unable to continue pursuing a Masters via Drexel’s i-school (Library and Information Science – all on line) due to lack of money (no job!). I am currently taking an on-line course called “Creating the Work You Love” with the word “work” meaning daily activity but I’m not coming up with anything. I wonder what I am denying? What feelings, what fears am I refusing to look at?

    I feel depression sneaking back in to my life bringing with it feelings of worthlessness masked as a life with no meaning. I’ll keep reading your posts because you continue to give me hope.

  • Jen

    You guys–

    I’ve been wrestling with this issue for a while. What can I do to have a focus and to eventually achieve something? I’ve considered and have taken one library science class in the past, but I don’t want to waste my time on something I might not use. So my other area of interest (for a long time) has been social work/ psychology. Which is just plain applicable to real life and an end in itself. I’m taking abnormal psych online this spring. There are 3 prerequisite courses I need before I can apply for a master’s program. We’ll see…

    Joan– Have you visited your local vocational rehabilitation office? They have grants and subsidizing for people who want to take classes or start their own businesses. I spoke with a counselor a few years ago about this. Here is a link to ALA approved online library science degrees (many are less expensive than Drexel):
    http://www.becomealibrarian.org/DistanceEdComparison.htm

    Is there some type of business you could start with your MS Society friends? Nothing too tiring, but do any of you knit or make crafts or jewelry that you could sell to support the cause? Lots of craft shows year-round, and you’d be helping the MS society. It might be something to give you purpose and something to plan and look forward to…

    Jen

  • More good ideas, Jen! Thanks! I’ll continue to give this all some thought.

  • Jen

    Joan–

    I’m still thinking about this: you can also plan such a venture for profit, and still include your friends. I know we can make a bit on top of disability insurance, so you could plan your venture accordingly, and spread the work among yourself and your friends who might also be looking for something to do.

    Now I don’t know if you’ll stop back here, so I’m gonna copy and paste this to your comments section.

  • Jen–you rock! You have such an upbeat attitude and lots of great ideas. I’m stuck right now because I suspect I am no longer going to be able to do my chosen career–dental hygiene. I couldn’t hold a sharp instrument steady, and I’m not even going into the numb, tingly and weak arms and hands!!

    So, I’ve applied for financial aid–both federal and state–and I’m going to get a degree in something that I can handle. I’m just not sure what yet, but probably something in the medical/health fields. I’m still waiting for an answer, then I’ll make my final decision and sign up for spring classes.

    Once I am more “stable”,I’m going to look for some volunteer work too. I’m keeping my fingers crossed!!

  • Jen

    Hi Abby—

    I am in a similar boat, as you can see. And I initially started in the health field as well, as an ultrasound tech. So boy can I relate with the steady hand thing. I did this for less than 4 years, in 2 different settings (hospital and private imaging center), and I also tried part-time and per diem. Too much walking in the hospital, too many patients and not enough breaks, and a lot of fatigue from standing a lot and overusing my right hand, arm, and shoulder.

    I went to the county vocational rehab office and talked with a counselor who said if I can no longer physically perform my trade, I can be retrained in something else and get subsidized by them. I’ve mulled it over in the past few years because I want to make the right choice, so now that I’m even having problems with simple physical library work, I’m considering something that is pretty much sedentary and VERY flexible in terms of scheduling. There is over-the-phone counseling (which I’ve done on crummy days with my social worker), so psychology might work. But I’m gonna get my feet wet and take a few undergrad classes first. The writing will still happen, and the psychology can only help me relate to others. So somehow the writing and psychology might merge into one definite career– I hope!

    You should look into your local vocational rehab office. I don’t believe you need to be on disability in order to take advantage of grants/ subsidies— I wasn’t yet on disability when I checked it out. Maybe a doctor’s note stating your impaired physical functioning? Not sure.

    Thanks again for reading!

    Jen

  • The beauty of a “clean slate” is, as the artist, you get to create your own picture. MS has cleaned your slate…now it’s time to paint!

    (beware of abnormal psychology…it’s not all THAT abnormal!)

    Linda D. in Seattle

  • Jen

    Linda–

    I need inspiration to fill up this canvas! It’s very frightening being let loose like this. Exciting but very frightening. What will I do? Will I work again outside of the home? Will another attack thwart it all? I’m being positive, but I have memories of the last attempt at school and the attack that happened during it. I’m starting with online classes. Hafta see if there are online grad programs in psychology that are accredited and also have the practicums that are required. I have a school about 25 minutes from me that has the master’s program and the other 12 credits if I want the counseling licensure. We’ll see. It’s all about one baby step at a time right now. For ME and just learning purposes….

    I’m psyched about abnormal psych! I bet you already know a bunch of us who fit into those stereotypes….

    Thanks for your continued readership and support– you always rock!

    Jen

  • oh you go for it! nothing ventured nothing gained right? then if you do it…maybe i can get the gumption to finish my masters in social work. it kills me to only have ten credits to go.

  • Jen

    You hafta get that degree, Merely Me! Hey, that rhymed. Seriously, you hafta finish. Do it, do it, do it! Did that motivate you? Probably not so much! LOL

  • RaShawn

    I just left my neurologist from reviewing my lab and cerebral spinal fluid results. I too have MS. I am a 29 year old first grade teacher and i am very afraid. What am I suppose to feel. I have no symptons just MRI with lesions. When will it affect me and how?

  • Jen

    Hi RaShawn–

    How did you end up going to your doctor? Did you have symptoms at first, but not now? Or were you just feeling sick?

    I had my first symptom at (I believe) the age of 27. Very short-lived numbness in a patch of my lower back. I didn’t get diagnosed until about 7 years later because my symptoms were vague and mild, and my MRIs weren’t showing too many lesions (although my spinal taps–2 of them– were coming back indicative of MS.)

    It’s hard to say what will happen with your MS. Everyone is different and MS in one person alone is very unpredictable. I am still confused after 10 years now. But I am coping well because of counseling with a social worker and good results from one of the disease-modifying drugs (Betaseron.)

    MS can be very frightening. I get very scared during acute attacks. I won’t lie and tell you that having MS is easy. It is not and it has changed my life course. But it has also made me more compassionate about other people’s situations and limitations. And I am more at peace than when I first had the disease because I now know more of what to expect. So you have every reason to be afraid, but I would say to get the best neurologist and find out about disease-modifying meds (they often slow the progress, like in my case.) Be careful about tiring or stressing yourself out, and accept help from others. And try to stay POSITIVE, because MS thrives on negativity. Talking to a therapist about your worries can also help.

    I am currently walking without a cane except during relapses. I have a relapse about once a year, although I recently went 2 years without one most likely because of the Betaseron. I do not represent everyone with MS, but I am a good example of how MS can turn out– not too awful. I hope the same for you.

    Thanks for reading, RaShawn, and I hope we talk again soon. Feel free to drop another comment if you have a question or want to vent. I understand.

    Sincerely,

    Jen

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