It seems lately that we are bombarded with tragic events and occurrences that are out of our control. It may leave us with a sense of gloom and doom as well as frustration, fear and an overall sense of helplessness. Sometimes these events may seem like they happen to others and never to us and then, suddenly, a situation happens that hits all too close to home. We do not have to experience a tragic loss directly to feel the effects. When these things occur, there never seems to be a roadmap or recipe available to help us get back to feeling in control. Support systems never seem to be close at hand and often times, several support options are necessary to get back to a feeling of ‘normal’ again.
Imagine the helplessness of dealing with a chronic illness, or worse yet, a terminal illness. You must face each day with the uncertainty of not knowing how much longer you have to life, not knowing how much more pain or sickness you can tolerate, or if you will survive the night. Dealing with these emotional challenges can be devastating to anyone walking this path and it does not only involve the patient. Every friend and family member walks the path with this person, and it is processed individually. A loved one, caregiver, friend or relative might not feel the physical symptoms, but they grieve and process the loss in the same way. And the physical body does not know the difference between the pain felt from the loss of a pet or the loss of a limb-the chemical release within the body is the same.
When we lose a loved one, we are placed in an awkward position. We grieve the loss of that person in our lives, and we feel the pain of the surrounding family and friends. The loss never seems to happen at a convenient time or when you have had a chance to prepare for the loss. The reality of the loss is usually sudden and painful. Our minds are in a spin, and we experience a whirlwind of feelings. What can you do, what can you say to help the pain of the loss? You want to reach out and offer some comfort, but there are never sufficient words to say and the process of reaching out is often awkward. In lieu of trying to express our sorrow in words, we reach for a sympathy card or send flowers or plants. But our hearts are often left with the feeling that these gestures may feel trite and insincere. Somehow these gestures, although kind, may not feel like they say enough.
Walking the pathway of a terminal disease can be emotionally devastating and I can tell you from personal experience, it is not an easy journey. Throughout the course of my disease diagnosis and treatment, the challenges along the way lead to some profound thinking about life, death and the future. It seems so generally unfair to be told you have a terminal disease, as it immediately insists you start dealing with your own mortality. We are all aware that someday we will all meet this challenge but sometimes it happens sooner rather than later. Children will experience the loss of pets, grandparents and sometimes even friends and immediate family. How one deals with the challenge of living a ‘normal’ life is often a personal journey that is wrought with many different techniques.
I recently discovered an option that has made a significant difference in my life and adjustment to terminal illness. A focus on life and its many blessings always helps turn a gloomy day into something beautiful that it might not have been otherwise. If I see sunshine on a cloudy day, who can then rain on my parade? The true rainbow is Hope. Hope for tomorrow. Hope for more time, hope for dreams to be fulfilled. And how do you find Hope? How do you describe it? How do you capture it and share it with others?
My disease is called Amyloidosis. When I was diagnosed, I was told it was rare, that 1 in 2 million were diagnosed with this disease and that there is no cure. I had to battle not only the disease and how it ravaged my body, but I had to battle the treatment and then living with the dark cloud of recurrence. My friends reached out to me with concern and a genuine interest in what they could do to help. There was little information available to read about it or where to turn for assistance. Family, friends, and all of us were wrought with the additional strain of the unknown. I could not help them to help me.
Recently, I discovered an organization that was developed by another woman who happened to have the same disease. She, too, found that there was no information, no support, and little option of hope for surviving this disease. Yet she did survive, and she got strong enough to form a Consortium that offers Amyloidosis patients not only resources and support, but the most precious gift possible. Not only does this organization connect patients with Centers of Excellence that focus on successful treatment, it provides connections to support groups, links to life saving medications, clinical trials and skilled physicians wo have experience treating Amyloidosis and its many forms. But the biggest gift of all that this Consortium offers is the gift of HOPE. This organization supports research. The research, time, effort, energy and funding it takes to find a cure. This Consortium of skilled, learned, gifted and compassionate people is dedicated to increasing awareness so that others may know what symptoms to look for. It helps highlight what is often missed, which gives the disease far too much time to destroy vital organs.
I had the chance to visit this Consortium and its workers. They are real people who have dedicated their hearts and souls to finding a cure. They work diligently yet smartly to support those of us who continue to fight the good fight. For the lucky ones who have been blessed with additional time (remission) we continue to receive support from their materials, connections and outreach. The Amyloidosis Research Consortium is the rainbow with a pot of gold at the end.
This is the solution. When you do not know how to impact someone who is hurting, you can reach out and offer the gift of Hope. By donating to research such as this, you are giving a gift of Life. By supporting the efforts to find a cure, you impact life. You promote healing. You offer something tangible that does not die and does not require watering and tending. You make a dent in a disease that is not in the limelight and is therefore unknown. You help stop death in its tracks.
You do not have to wait until a loss occurs to remember or honor someone. The impact their life has had on yours can be the catalyst to impact the life of another. Far too many remain undiagnosed and suffer vague symptoms that go untreated. You can be the difference in many lives. You can send your donations to https://arci.org/donate/. You are not limited to a one-time donation-you can offer a monthly donation as well to provide recurring support.
This is an easy way to make your heart and others feel good. You can leave behind a legacy for others that Hope conquers all; that rainbows are real and that research defeats disease. Your support is appreciated.