A year ago June 12th … a day in June followed six months of intensive diagnostic procedures, some predictable and positive, one terribly frightening but blessedly negative… and then I was given the diagnosis. And now, a full year of wrestling with the whys and what ifs and what now and how will I … Fifty-two weeks of pondering when did and what happened and could it and mightn’t it … Twelve months of recognizing that I now know less about myself than ever before in my life … wondering how to and when will and dare I and won’t it…
I now have the twelfth batch of thirty syringes safely waiting in my refrigerator… I have the appointment with the neurologist scheduled for next month… it will be a quick walk through, just as the three month follow-up was. He’ll ask questions: I’ll answer… Yes, I’ve lost weight. Yes, I still look good. Yes, I’m rotating my injection sites. Yes, I will stay on the meds. Yes, I feel supported and safe at home and at work. Yes, I’ll come back for an MRI when you want one done. Yes, I’ll go to the blood lab again. Yes I’m tired but aren’t we all in July… I have no questions for him to answer …There are no answers to the questions I might have asked … Why did this happen to me? What did I do or not do? When will this begin to defeat me? Why do the treatments have to be injections? Why must they cost so much money that I’ve become a liability for my health insurance group? Why doesn’t the government mandate regulated price restrictions on these life-sustaining drugs? Don’t they want us to be able to keep working? Will I reach my retirement age safely? Will I ever feel normal again? He is a busy man, with no time for answerless questions. He’s told me the truth, that I have MS. He’s prescribed a medication that reportedly has helped some patients to slow the inevitable progression. There’s really nothing else that he can do for me. There is nothing that can be guaranteed. There’s really nothing that I can ask him to do, nor anything more that I can promise to do to make this better for myself.
I don’t want to call this an anniversary. There is nothing here to celebrate. It’s a 1 year mark. It’s the first mark in an undetermined number of marks that will continue to accumulate for the rest of my life. Time hasn’t a chance of healing this wound.
Please forgive me … my intent in writing here is not to highlight the negatives in this disease and its treatment and prognosis. I do stay positive in my life, at home, at work, in the community. It is a mask I wear well. They say I look good. I wish I could honestly live up to the positive impressions I work so hard to deliver. It’s only here that I can be truly honest. It’s here that I can dare to acknowledge the fear. It’s here that I know people do understand. I don’t want to share fear here … just to express it, let it be real, let it have a place where it can sit, away from me. It won’t go away. I need a place for it to be.
I need to see if others have overcome this additional, hidden feeling that has come with the diagnosis: this sense of lost identity. I want to know that some may have restored their true selves. After this full year, I still feel alien to myself. I am not who I once was. The mask is in place; I look the same. The world is sure that all’s well with me, that “at least” I have a diagnosis; they are happy that I have the meds that I need. I don’t want to disturb their view, or lose their faith and trust. I don’t want to disappoint them. I still have a purpose, and goals. I haven’t relinquished those in the loss of who I thought I was. I still want to serve my purpose. I still expect to meet my goals. I can hold this posture for now.
I’ve always wanted to help others, and have been given in my life the gift of patience and the opportunity that allows me to listen. I can be a cheerleader for people recently diagnosed, and share tips that I’ve gleaned through my sorry trial-and-error self-study of injection technique … Within this one solitary year, this passage of over 300 injections has taught me a thing or two, and I’m happy to share helpful ideas for others facing this unexpected task. I can offer the rationale of staying determined, staying on the difficult meds, staying on a healthy menu and exercise plan … I can share the will to restrain this disease with the meds prescribed, and I can encourage reaching for the satisfaction of the rewards of weight loss and a smaller, healthier size. I can speak to the ease in moving without carrying all that weight. At least that physical burden could be put down. There is enough in this disease to weigh us down, without that.
And I can share the blessings that my husband and children and grandchildren share with me … the warm, safe feeling of knowing their love is unconditional, that no matter what does happen, their love will not waver, will never leave me alone to deal with whatever is ahead. I can point out that their faith and trust in me will inspire my efforts in carrying on. And I can offer my family the honest gratitude that my parents, as I walked with them along the path of their illnesses, always offered to me.
But I have to ask those who are far beyond my experience: does the second year, or the third, or the fourth, allow me to forget or at least look beyond this fear-filled stranger that I’ve become, to gaze away from this new persona, to remember the oh-so-recent past, to nostalgically slip back into at least a shadow of self-confidence and trust, of who I used to be? Or is the best I can expect simply an ability to accept these unwelcome changes, to grow into this new identity, to let go of those once idealistic and now elusive dreams of a healthy retirement, and to set new, reasonably-appropriate, more adaptable goals?.
I want to minimize the impact of this diagnosis on my family. I want to successfully complete my career as a teacher. I want to continue to reach this new generation who will lead us through this new century. I want to offer the perspective that I’ve gained through the last century, my century. And I want to achieve the full pension that will allow me to retire with dignity. I want to keep the mask in place, to minimize the stress on my loved ones, to lessen their vision of my struggle. It seems I still want a lot in life, and I’m looking for reassurance that others have found their balance despite this diagnosis, that it can be done. I’m willing to work at it. Many athletes train in tandem, motivating each other’s forward progress, sustaining each other’s energy, focusing each other’s purpose; their efforts are spent pacing each other’s speed, and aiming directly at their goals. It’s a worthwhile model for all of us who have been given this diagnosis and its challenges. As much as we try to shield those we love, it is hard to maintain that momentum, and find that balance, and redefine those goals if we try to go it alone. Despite all that MS will place in our paths, we can strive to live our lives with those we love. We can dare to want that much from life. We’ll have to work at it. We have this new century ahead to do so; we have many marks yet to make. The marks are not celebratory. But the time ahead of us may yet be.