There are so many difficult and challenging realities that I can’t avoid and so I try and take a practical attitude when addressing them; But I am far from perfect.
It was extremely worrying when illnesses slowly started taking over my life and the plans I had made for my future. It takes a long time to accept and the grieving has been an ongoing process. But I can’t avoid it so I just do it as best as I can.
My former career was that of a project manager and in that role I was extremely aware that life doesn’t always go according to our plans. As a PM we spend countless hours devising plans for what to do if something should go wrong. It would be dangerous to proceed without contingencies, so we didn’t.
When I could no longer walk as I once did, we had to develop a plan for how I could get around. When I couldn’t work we had to face some tough financial decisions. It was imperative or else our lives would be further jeopardized. It is because of these planning exercises that we have never had to ask for help or handouts from friends or family. We agreed that whatever was required we would have to do. If we had to sell everything and live much smaller and meager lives then we would just do it! No arguments and no exceptions. Swallow the pride and do what must be done knowing that we would still have each other.
… Whatever it takes.
Whilst it is a well accepted truth that we can never predict what will happen to us and when, I personally think it is dangerous not to attempt to try and make a plan B. I am reminded of the immortal words of Monty Python no one expects the inquisition. And we don’t. We live for today but it is always wise to have a plan for when things go awry. When you become long term ill you have to constantly plan everything, including simple outings.
Years ago I remember making suggestions to a friend for if they couldn’t work any longer. My friend also has an Autoimmune disease. Sadly it was not recieved well and I was told not to be so negative or pessimistic. I resolved to not discuss such things again and reminded myself that in my eyes these suggestions where well intentioned and not from a negative place, but I respect those who prefer to not consider different possibilities.
In my current situation if something was to happen to my husband not only would I be deeply emotionally wounded, I would also be physically in need of assistance and care. He plays a huge role in my life and although I dearly wished he didn’t need to, it is the reality of my life now.
Thus I would be left alone and a huge void would need to be filled. I may even be institutionalized. Although this is extremely sad it is also one possibility and has been a very real outcome for many other chronically ill.
In Australia today many people in their 40s face being placed in old age care facilities because they have no one who will care for them. It is an extremely sad fact and reality. It deeply saddens me and I find it heartbreaking.
I personally don’t have family or freinds who would want to care for me, or that I would want to burden. And my fur kids require caring for too. We are a package deal and so there is much to consider and try to plan for.
My husband and I have had to have some extremely difficult discussions and ponder some serious scenarios and ask ourselves what if?
Is this pessimistic? Is it negative? Is it unnecessary? … not to me or us.
Therefore we have discussed my care on several occasions, and if ever he should need care too. We have taken out insurances. We have contacted people we trust to act as legal guardians and medical authorities on my behalf. We have taken some important legal and financial steps but we realise that there are still some things we dont have answers for but we are always trying to do our best.
We have agreed on what I would want to do if I deteriorated beyond any quality of life. This was an important conversation to have.
These difficult conversations where necessary for my peace of mind and although our plans are still not complete and fool proof, they act as an anchor for me when I worry or feel anxious about the future. I am only human after all.
It is everyone’s personal choice whether to contemplate what if but I do not believe it is a morbid or pointless exercise.
Just as it is wise to write a will, save for a rainy day or take out insurance policies, I believe it is also beneficial for us to plan for when life throws us more difficulties and challenges and if our health is ever changed or compromised.
There may be many out there who may disagree and I have no issue with differing opinions. We are all free to plan, or not plan, our lives as we wish.
If I could speak to my younger, healthier, self I would have encouraged her to plan for a life that doesn’t go as I planned and take steps to protect and provide for the things that matter most. I would have made myself aware of the effect that health plays in life. I encourage healthy people to have that conversation too. But that is just my opinion.
Even the very act of openly discussing some unwanted and painful possible events has taken away a lot of its power to frighten and distress me.
Of course I do not know what the future will bring for me and my progressing health issues, but I want to feel that whatever may happen, that I have tried to do what I can to plan for some of it. I owe it to myself and my husband.
There is nothing easy about a life with chronic illnesses and incurable diseases. We face things that most people may never need to face. But each thing we try to do is an amazing achievement in itself and it can even serve to help us treasure morethe little things in life and treasure the people we have even more than most people may ever do.