To live past your time is a terrible thing
Confusion, frustration, and pain will it bring
Separation will come from friends who are near
Relationships lost with those who are dear
Time will be wasted, hour by hour
Days full of purpose, beyond your power
Your body decays but your heart is still there
Fighting against all that needs repair
Loved ones face each day filled with suspense
Good day or bad? It all makes no sense.
Yes, life goes on, sometimes too long
when the time to move on has come and then gone.
The above is a poem I wrote several years ago as I reflected on life with ME. This illness is incredibly isolating. It is also unbelievably limiting. ME steals your health, your friends, your career, and much more. Sometimes it feels like it steals your sanity, too!
I’ve often heard this illness referred to as a “living death.” And that is what it is in many ways. ME patients, especially those of us on the severe end of the spectrum, often find ourselves in that lonely, confusing place between life and death. For many of us, ME will kill us, either directly or indirectly due to the amount of strain placed on our bodies (see my earlier post on this subject). But when it will kill us is anyone’s guess. Thousands of ME sufferers are bedbound, confined to dark, silent rooms, unable to handle physical touch or the sound of a loved one’s voice without severe pain and flaring of other horrendous symptoms, and we remain in that state for many years – often over a decade!
Being held in this place of limbo is difficult, and not just for us. Family members find themselves struggling emotionally, unable to truly “live” with us but unable to mourn our loss as well, as we’re not yet dead. People in the same home as a severe ME sufferer spend years walking on eggshells. They must be conscious at all times of any noise they produce, any light that may get into their loved one’s room, etc. They are often forced to keep odd schedules because our bodies are incapable of sleep at regular hours. We often end up needing help at all hours of the day and night. Even the assistance we receive from loved ones hurts. How difficult it must be to know that a loved one is suffering terribly in the darkness of the next room but be unable to do anything about it! To know that your very presence itself causes pain must be heartwrenching indeed.
My husband and I miss each other terribly. Yes, we still live together. But we can’t really live together. ME has stolen my life, our life, but allowed my body to continue breathing. Yet there is peace to be found even under these circumstances. I plan to go over that more in a later post. For now, I simply wanted to give a brief snapshot of what it is like to live in such limbo. I’ve learned a lot since I wrote that poem, but I still have days when it resonates strongly with how I am feeling. Prior to developing ME, I never understood how someone could experience true “living death.” That’s changed. It may not be a medically accurate description, but so far as the experience itself goes, there’s none better.