When is it time to decide that walking everywhere is no longer a viable option and using a wheelchair is?

Adult Onset Limb Girdle Muscular Dystrophy as a progressively debilitating condition is quite an enigma regarding the progression timeline or surety of outcome. Living with this continuous uncertainty has me sometimes feeling somewhat of a fraud, that maybe I am being dramatic or that I can try harder or that it could get better. Crazy, I guess, but thought patterns and emotions arent always rational.

I can still stand and transfer depending on the day, what I am transferring between, and how I am shod (with heel height being a big factor). And I can actually walk a distance with Gaz walking backwards and using his forearms as my walking frame, I wonder whether, if I could just try a little harder, push myself a little more, have a little more inner fortitude, then maybe I could walk unassisted – I don’t really need these darn wheelchairs!

Then the pragmatic side of me kicks in explaining yet again that even if I could walk for a few steps I would most likely lose my balance, lose my strength or not lift a foot high enough and bam, down I go. Is this actual pragmatism, loss of sensibility or sheer terror? For I am ashamed to admit that I am not in any way a risk-taker and the thought of avoidable injuries that not only leave me in pain but require those around me having to work harder to aid me during recovery is quite an appalling little scenario.

Many people in these and similar situations feel that they must continue to walk despite sheer and utter daily exhaustion, frequent falls, and a multitude of injuries lest they ‘give in to’, ‘give up on’ or, god forbid, ‘accept’ their situation. Maybe pride does come before a fall in these cases. But can we be blamed when we grow up taking our abilities for granted, our self worth as a functioning human predicated on the assumption of physical wholeness? When this gets taken away progressively it makes it hard to accept and move on because we are constantly grieving each new stage of reduced ability. Surely, while we can still do certain physical things like walk a few metres, chop some veggies (even if not put the saucepan on the stove) and hold a water hose to the garden, there is still that chance to fight the inevitable albeit undefined outcome.

These scenarios require constant self-examination and adjustment in thinking for all of us with any physical limitations. How easily we can come to any sort of acceptance depends on our personalities, our natural mental state, support network, socio-economic background, access to help, and above all the amount of self-love and belief we have in our own worth as a great and important part of our community. So the answer to the question of whether and when to wheel, or not, is as unique as we all are.

Take care ‘til next time,