I like to think of myself as the cancer whisperer and I have a good reason for it. About nine years ago my best friend from college came down with a stage four cancer that her doctors were not sure they could cure. She had been sick and misdiagnosed so many times; as her young age was the reason medical professionals decided it must be all in her head. When it comes to discrimination of any kind it affects EVERY part of your life, not just work or school.
Even though it was my friend who was sick I felt like I was carrying the weight of her world on my shoulders. Oh she was NEVER EVER a burden in fact she was living in another state at the time. Since I could not be there for her physically I decided I would be there emotionally doing anything I could think of to make her journey easier. I wanted to be sure she knew that though my life was going on without her momentarily, that she was still always on my mind and more importantly carried within my spirit.
When I think about that year it sort of takes my breath away. I am more grateful for her life than I am for my own. There are no words to express how I feel that I am able to tell you she is in remission. Her strength and drive doesn’t come close to anything I can imagine. In fact I have a tattoo to remind me every day the power of strength and perseverance can have on as all.
As part of that time period any time I was feeling down about something trivial I would go out and get a card or present and sent it to my friend. I wanted to be conscious that my problems were really nonexistent and acknowledge what is truly important in my life. During this time my friend was not able to read or respond in any way. I knew that and always intended that when she could she would see all of the love and support I could possibly provide from far away. I did it more for myself than her. I wanted to be able to help in some small way.
It was through that dark period where I realized the true power of love and compassion. I think in many ways compassion is more important out of the two. As someone who suffers from a chronic invisible illness I know what it is like when the outside world doesn’t have a clue what’s going on inside of you. Worse, there are days where you don’t have the strength to give a rat’s ass either. But when the pain is so great on the outside the effect it is having on your insides becomes a serious issue.
Depression is not taken very seriously in our society. Everyone I know is on an anti-depressant just to get up and out. Even the commercials on TV for the millions of drugs we push on people make it seem so curable. After that cartoon lady with the towel dragging behind her is on some new meds she is off and at her kid’s soccer game the same day. Wham, bam, thank you pharmaceutical industry. Like that is all it takes.
But what if your depression isn’t caused by a chemical imbalance? What if it derived from the many years of suffering so deeply, for so long, that it is not just depression, but a serious medical issue where a patient is having suicidal thoughts?
Exploring the reasons for such feelings and finding help for someone who cannot do it for themselves can be lifesaving. I am not someone who can resist such a mission. I try to not get involved in other’s people’s lives because I know I can get emotionally invested and after doing this simultaneously many times I get burned out. I want to save that energy for myself when I need it but it’s my nature. I cannot help it. I am a person who has to show compassion for my friends and family going through struggles when I feel I can help.
I have been struggling the last few days to finish some posts I have been working on. They are for fun purely reporting to the world what is going on in my life. Yet no matter what I tried I couldn’t seem to focus long enough to type. I know exactly what I want to say down to the punctuation marks but my page remains mostly empty. It appears I have something deep inside that is more serious to address. So here it is.
A very good, longtime, family friend is suffering from what is commonly known as “Suicide Disease”. Officially it is called Trigeminal Neuralgia.
This is how a medical professional will describe this illness:
“Trigeminal neuralgia, also known as tic douloureux, sometimes is described as the most excruciating pain known to humanity. The pain typically involves the lower face and jaw, although sometimes it affects the area around the nose and above the eye. This intense, stabbing, electric shock-like pain is caused by irritation of the trigeminal nerve, which sends branches to the forehead, cheek and lower jaw. It usually is limited to one side of the face.”
This is how a patient described her life marked by this disease:
“It’s a fun brand of the disease that is marked by non-stop, 24-hour pain that can go from mildly annoying to HOLY GOD SOMEONE TAKE MY SKULL OUT OF THIS VICE interspersed with the severe “electric shock” type pain of Typical TN….This disease is also known as the "Suicide Disease" because many of those afflicted have either committed, attempted, or thought of suicide. I sadly know from experience that it is aptly named.”
My attention was brought back to this disease when I read an article on a migraine site about a young woman who had been missed diagnosed as a chronic migraine sufferer when all the while she really had Trigeminal Neuralgia (TN). The difference is comparable to having a paper cut versus having your arm amputated.
Trust me I am not saying that lightly. I have had pain so bad in the middle of the night (why always in the middle of the night are we always at our sickest) I have truly prayed I had an aneurysm and it would just burst and that would be the end of it. I didn’t care to be alive because the pain traveled so deep I didn’t know how I was still alive. You are surely not living a life, and are past the breaking point of even thinking you have a capability to break the pain and end your suffering. What’s worse is that people living around you don’t see it. They know you are ill and in pain but ask: “God why hasn’t she showered yet? How come she isn’t going back to work? Why can’t she get out of bed?”
After dealing with an illness for so long some companions and families get use to you in that state. It is the same thing as seeing war on network news every night. It allows viewers to become desensitized. They ultimately move back to focusing on their own lives.
Unfortunately the one who is sick can think of nothing else. There is nothing you can do to wave a red flag and say, “Hey I am dying over here. Someone for the love of God help me. Sit with me. Tell me it will be all right even though I know it won’t. No I don’t need hot tea and no I am not hungry. No I don’t need to call the doctor. It is what it is. This is as good as it gets”.
This is just my story and I am saying that as a person who has recently transcended time and space to be a functional human being most of the time now. But I won’t forget where I came from, or what suffering can feel like, knowing I will still have those periods in my future. However I never want that to get in the way of what I have learned, namely what simple acts of compassion and hope can do.
There is an account on Instagram called “Rebel Thriver”. They are always posting positive messages and I have noticed at night they seem to post this one the most.
The site provides comfort and support and was started by a young woman as a way to deal with domestic violence that had entered her life. She shares her truth as openly as I share mine. I always find at least one of the sayings she posts daily helpful. Words can be so powerful when you hear your truth ringing in them.
I have learned so much by being on both sides of a serious illness. What it takes to make sure you are the supporter you want to be and the one that doesn’t what to have to ask for it. Reading all about TN brought that flooding back. There are new treatments being discovered every day. I pray one is the answer. I know for me, Botox injections truly saved my life. Now it is being introduced with other illnesses. Like I say, desperate times call for desperate measures.
Please reach out to someone you think is in trouble and cannot get help for themselves. There is no such thing as mistake when it comes to love, support, and life saving measures.
Remember compassion cannot be taught, but finding a way to show how much you care for someone when they are at their lowest point is always available. Small things are important too like sending cards and flowers, helping care for children, cleaning up the home, or by running errands. I also like to see if I can find a better doctor, treatment, or information to be able to assist in a real way. It can seem small to you but it will feel like everything to your loved one.
For those of you out there suffering in silence know you are never truly alone. Please reach out for help when you need it.
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