SHARING LIVES
For as long as I can remember, I've measured events in terms of before and after. As in before my first child was born, after my marriage, before Matt left for college, after the first grandchild was born. I can vaguely remember life before Ben's diagnosis, when a crisis meant a broken leg, a failed test, a lost marriage. I chalk it up to my sense of innocence or my childlike belief that bad things don't happen to good people, despite the title of Harold Kushner's book. They do. The question is not how to avoid treacherous events, but rather what to do if and when they inflict themselves into our lives.
I believe talking about the issues each of us confront in the face of ALS can be helpful. The given here is that we are each caring for or grieving the loss of someone we love to ALS. The question is how do we take care of ourselves, our children, our parents in the face of such overwhelming angst. How do we make time for our own lives, fulfill our dreams, maintain relationships and not collapse under the weight of the oppressive truths we face each day.
I invite you to participate in Before and After, here to give voice to your concerns. Write a story, perhaps, about how you cope each day. Ask a question that other readers might be able to answer. Share an insight you’ve uncovered. Together we can find some answers, share concerns and seek support - all of which, in the end, is all we can do. Your comments, questions, thoughts, attitudes, ideas, suggestions – all are welcome and appreciated here.
Sign up so that when new postings are made, you'll be notified. Together we can lighten the weight and lift our spirits.
I hope to hear from you soon.
Barbara
True Love
2 years ago
Our story is a bit odd and probably different than most PALS/CALS. We didn't get the diagnosis until a week or so after the ventilator. "It's a movement disorder" we were told. "Pseudo-bulbar palsy". And the fasciculations were "benign". "78 year old people don't get ALS". "It never presents this way". "The EMG showed only changes consistant with age". (whatever that means!?). We didn't have time to talk about it or make decisions, because we didn't know what "it" was. I feared ALS from the start, but none of the 22 (that is not a typo, we saw a grand total of 22) Drs we saw thought it was ALS. In fact two prominent neurologists told me point blank that it was not ALS. I hugged them!
ReplyDeleteI want my hugs back!
Once the ventilator was a part of my dad's anatomy, there was just no question about it. He would move in with me, I would care for him, my husband and daughter would make a few small sacrifices (that were nothing like the huge ones that my dad made for us over the years), and we would settle into a family life that was a bit different that what we were used to, but hey! We are family.
Daddy never wanted to be a "burden", and he isn't! People tell me I am special, and I am not. He is family and this is what family does. Family cries, and family cares, and family does whatever can be done to make it better in whatever way possible. So in that respect, Barb and Stephen are like members of the family these days. (Oh,and late at night when the rest of the family sleeps, the "me" part of the family apparently talks too much--sorry!!)
Bottom line is, love makes caregiving seem easy, even when it isn't. There is no 'burden', there's just a member of the family that needs help, and there's people like Barb and Stephen that lend a bit of hope to a formerly hopeless situation. And I am grateful that they are here.
A friend and I were exchanging emails recently and the end result was a joint decision that there WILL be a tomorrow. And as long as there is, CALS like us will always be looking for a cure!
Not a very interesting story, I'm afraid...but that's all I got.
Anj
Yes, I believe that betters days lie ahead. Finding that thin line between reality and hope-that's the challenge. To remain optimistic in spite of the odds. Respect for what each of us is able to do and respect for what becomes too difficult. Ask for support from those in your life who have offered. They want to help and it lifts the burden a bit. Perhaps others would like to comment on how it feels to need to ask for help and what the experience is like when you do.
ReplyDeleteHello Barbara and Anj.
ReplyDeleteI just wanted to write and say how very touched I am by both your stories.
My mom was diagnosed with ALS 5 months ago. Today was her 51st birthday. In many ways, I feel I've already lost a piece of her. It's hard to listen to the broken little voice that stumbles through conversations and look at the hands that barely have the strength to press down on a cigarette lighter. It's difficult to imagine those same hands once tucked me into bed and guided me through crowded supermarkets. That same voice was once robust enough to give a strong scolding, or offer gentle advice. In many ways, I feel like our roles are reversed and I am now the one doing the mothering. It makes me sad to feel that she is the one who now needs care and protection. But I still need her, and that hasn't changed... and I still don't like it when she says goodnight and goes to bed and another day is over. I wish I could stop time.
We cry a lot. We mistake our resentment of the disease for resentment of each other. We laugh a little. She desperately wants to make an optimist of me, and I'm happy enough to follow her into a little place of absolute denial.
Roisin
Wishing your mom a very Happy Birthday with my deepest wish for making the best of each day you have together. You sound like a wonderful mother daughter team with a great deal of love for each other - one of life's gifts. Thanks for sharing your world with us. Barb
ReplyDeleteOops! I should have mentioned that mum hasn't thrown caution to the wind and become a chain-smoker. She keeps a lighter to light her devotional candles. -- Roisin
ReplyDelete