Dear Nate and Oprah,
Knock, Knock Nate! Are you up for a challenge?
Mom and I are longing for a home that feels like a sanctuary for both of us—a place that blends what we both love, expresses our deep love for each other, and provides a place of peace, comfort and respite.
After college graduation, I became chronically ill with a ‘mystery’ illness. For the past nine and a half years I have been living at home with my mom. With her being my primary caregiver and me being sick, we have little time or energy to put into creating a home that we love. We find ourselves overwhelmed by the task. Dealing with the medical issues at hand, the care giving, my inability to help out with shopping or home projects, etc. leaves little time for us to work on creating what we need so much—a home that provides us with a place of rest and comfort.
I spend 24 hours a day, every day at home, leaving only for outings to the doctor. I would like to have a place that: encourages healing of body, mind and spirit, provides peace and sanctuary in illness, and provides a warm welcome for friends and family who go out of their way to travel long distances to spend time with us. I want my friends and family to love our sanctuary so much they keep coming back for more! Because I am at home ALL of the time, I somehow need to find a way to ‘go on vacation in my own home.’ Is this possible?
I realize, of course, that having a home we love cannot cure me or take away the stresses of care giving. But I DO know that it can help us feel more peace and comfort--that having a home we love is a tangible thing in the intangible world of illness and healing. Having our own sanctuaries as well as a place for visitors would create a better environment for both of us. I long to have home that fills us up rather than sapping us of our limited energy. And I know my mom wishes for this too.
We are challenged as two adults with two very different styles of decorating and living to create a space that we both love and agree upon. We have lived in this house since I was nine months old! Now, we need to create a space for two adults. Often, I find that our differing styles, lack of ‘separate spaces’ and room set aside for visitors adds unneeded tension to our household. I don’t want to spend this extra energy on feeling overwhelmed or disagreeing on things anymore.
We have been able to start work on many rooms, but never finished them; they remain without the accessories, art, pillows, rugs, and photos to complete the room. For example, four years ago we were able to have our living room painted and buy furniture (and rid ourselves of the 1970s wallpaper!) but we still have not been able to bring the room together. We love the color and the furniture in ‘my den’, but it currently doubles as a guest room and has little functionality for my needs.
Both of us really need bedrooms to retreat to. I’m ready for ‘grown up furniture’ rather than the furniture I got when I was in first grade. And, I’m ready for a room that reflects who I am now. I spend 18 or more hours a day in my bedroom. I often just lie and stare at the white ceiling and the lavender walls, dreaming of ways to make this space restful and healing again. Mostly, I associate this room with the worst times in my illness. I spend many hours of the day ‘being’, rather than ‘doing’ (since I am not able to ‘do’ much!), so I’d like to feel a lot more ‘Zen’ in my room! Nate, if you can only help with one room in our entire house, please help me with my bedroom. I need a sanctuary for healing.
Watching the wear and tear of care giving on my mom breaks my heart. Plus, she just retired (largely because of the demands of caring for me) and ended up needing rotator cuff surgery! So, she’s down for the count in the lifting department for a while. She always puts others first, so her room is the most unfinished room in the house. I want her so much to have a place that she loves to go to and can relax and get a good nights’ sleep!
Lastly, we need a great space for visitors! The love of friends and family is what sustains me each day.
We have more than enough space for two people in this house—it’s just finding a way to best utilize the space and to create spaces we love and function for our needs. You’ll notice we have a LOT of recliners because I spend most of my time reclining or lying flat.
I know that I want spaces that reflect the following:
1. Love is in abundance here at the ‘[last name removed for privacy purposes on blog] B and B’ (“We Are All Welcome Here” –Elizabeth Berg—)
2. Hope abides here (“Hope is the thing that perches in the soul and sings the tune without words and never stops at all” –Emily Dickinson--)
3. My spirit dances even though my body cannot (“Dance is the hidden language of the soul” –Martha Graham--)
My mom is simpler in her request for our home: Peaceful, restful, comfortable, tranquil. I couldn’t agree more with her choices!
For the first time in all these years of being sick we find that my doctors may have found the cause of my illness, but the treatment is, to say the least, extremely unpleasant. Even with the blessing of the best doctors in the country fighting their hardest to solve my medical ‘puzzle’ the world of medicine and mystery illnesses is intangible. We do know that I have a severe and disabling form of Autonomic Nervous System Dysfunction/Dysautonomia, and are currently treating me as if it could be caused by chronic Lyme Disease.
This means that on a daily basis I deal with debilitating symptoms of extreme fatigue and pain, an inability to regulate all of the ‘automatic’ systems of the body such as heart rate and blood pressure, as well as many, many more symptoms including difficulty with sleep and concentration. Most of my energy goes towards the most basic activities of daily living. On a good day, I use my precious energy to talk to a friend or have a visitor over for a couple of hours (I will give anything to be with those I love even though I crash with exhaustion afterwards), spend time writing/blogging, listen to books on tape (as I can no longer read), cuddle with my pooch, or listen to music. In my pictures, taken on a ‘good day’, a few strokes of blush make me look fairly ‘normal’ and ‘healthy’, but those who know me quickly see the color in my face fade to ashen and my energy level deteriorate. For the most part this is an ‘invisible’ illness to an outsider. I honestly cannot remember what it feels like to feel ‘good’ or ‘alive’ in my own body. This means that we do need a home that accommodates my disability.
Obviously, I desire abundance in health and love more than anything in the world. A home can’t cure me. I do believe it can facilitate healing for both mom and me. Even without a healthy body, I work hard to find and create contentment, love, peace, and healing in all aspects of my life. A home, in which I spend every hour of my days, can have such power. I think Oprah and Nate have the power to give us a fantastically magical home—a tangible in our world of intangibles and uncertainties. While I wait patiently for healing, I seek some tangible sources of peace, tranquility, comfort and contentment. I think that Oprah and Nate can do this magically and fantastically for my mom and me!
“Many people think of home as a place to stay…it is more than that. Home is a place to be…a place where we can most truly be ourselves.” –Anonymous--
We both know that if our home felt more like, well OUR HOME, we would be overjoyed!
Waiting for your knock,
Emily (and Woof! Woof! From Asher)
P.S. Beware Nate! I’ve seen your dogs on the Oprah show and I can tell you that our Asher Noam is JUST like your pooches—a barker and a jumper (just in case you ‘happen’ to show up on our doorstep!)
P.P.S. Since I hear you can’t even boil water, my mom will surely cook you a wonderful meal as she is a marvelous cook.
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