You recognize the names of those who have dedicated their lives to making a difference...You can probably remember what the cause they fought for just by seeing their names: Mark Klaas, Jerry Lewis, Betty Ford, Oskar Schindler, and Christopher Reeve. Then there are the causes you associate with by brand recognition: the pink ribbon, the AIDS quilt, the telethon, and the ice bucket challenge-a clever and brilliant marketing approach that brought so much money and awareness to ALS, better known as Lou Gehrig's disease.
What about the lesser-known diseases and the people who work tirelessly to bring attention to their cause? These fighters may not be in the national spotlight but their efforts in some way or another are making a difference. I have a friend whose daughter suffers from Rett Syndrome, a debilitating and unrelenting affliction that almost always affects young girls. Although it is a rare disease, affecting 1 in every 10,000 female births, it is still a disease that has brought so much pain and challenge to her daughter and her family. She has spent endless hours organizing stroll-a-thons, raising money for Rett Syndrome, and sharing as much news and updates on this disease as she can. Not only has she brought awareness regarding Rett Syndrome to our community, she has also been genuine with her feelings. We feel her pain, but we also get to see how her beautiful daughter, with the 1,000 watt smile, can bring so much joy and happiness to a mother, her family, and our community. Through her and the efforts of her mother, we are all learning the life lessons of humility, care, love, and acceptance.
September is National Spinal Cord Injury (SCI) awareness month. What exactly does that mean? Perhaps it may be something as simple as thinking of someone who is paralyzed and praying for their recovery. For others, it may entail making contributions to a recovery fund or spinal cord research. As the wife and caregiver of a spinal-cord injured person it is my commitment to bring continued awareness to an unforgiving affliction. As you know 17 months ago I started my blog/website, Hopelovelive. Although what inspired me to write was a need to heal through the power of words, I have come to learn how important sharing our story has been for others. What was unexpected was the extent to which my blog has been read by people all over the world. I’ve had many people write to tell me how my blog has helped them in so many ways. It has given them hope and a sense that even in the face of desperation, things will turn out okay. And I will keep writing, because sharing is caring. There is enormous comfort and satisfaction knowing you are helping others in their desperate time of need.
In honor of National Spinal Cord Awareness month and my continued efforts to bring awareness and acceptance to this cause, I wanted to share 5 points to keep in mind when interfacing with those that are injured (plus their family).
- Understand that the person in the wheelchair wants to be treated like everyone else. It is important that they have a voice, an opinion, a vote. If you have a question to ask the person who is injured, ask them directly instead of asking the person to their left, a spouse, or caregiver. So often when we are dining out at a restaurant the waiter/waitress asks me what my husband wants to eat instead of asking him directly!
- Thank you from the bottom of our hearts for inviting us to join you in having some fun. Sometimes we might not be able to make it if the circumstances are not ideal, but we will do our best (& get creative) to be there, even if it’s for just part of the time. It is so much better to have the choice to participate, than to not have the opportunity at all.
- We might be a little late. It takes time to get someone with a spinal cord injury ready for the day. Putting on pants and a shirt for someone laying in bed is tricky. Getting a person in and out of the car and their wheelchair into the trunk takes an additional amount of time and effort. We are working as fast as we can, but even slating an additional two hours to our routine may not be enough. Thank you for holding us a spot and clearing our path for when we get there!
- Know that with spinal cord injuries comes pain and discomfort. There may be times that we have to cancel at the last minute due to medical flare-ups, or dealing with a body that might be a little grumpy and achy. Understand that we would rather be with you having fun, than taking a pass and resting at home. Have a drink in our honor, because we will probably be having one in your’s!
- When we do see you we welcome your greetings, handshakes (even if they aren’t the best), hugs, and love!