Dr. Watson, friend and biographer of the great detective Sherlock Holmes, once said,
“I could not wish anything better than to be associated with my friend [Sherlock] in one of those singular adventures which were the normal condition of his existence.” – From the case of the ‘Man with the Twisted Lip’
I would be hard-pressed to use the word ‘adventure’ in the same sense as Dr. Watson, but I would certainly use ‘singular’. Cooking over 1500 pounds of carrots annually seems singular to me. A positively-pressurized space in my home fits the bill too. Those of you acquainted with our situation know that’s only the start of our everyday ‘singular’ life. Our one-of-a-kind life. A kind of life I wouldn’t have believed if I wasn’t seeing and living it every day.
I never intended to have a personal blog apart from our Caringbridge, but I have been encouraged by people close to me to start writing. I was mostly dismissive of the idea at first. I don’t particularly enjoy writing, and often find myself staring at screen for 30 minutes, having only written and re-written a few sentences. Our situation is hard to put into words. Johanna’s illness and our everyday realities are so unique and painful that I often find the thought of writing daunting. Nevertheless, as Mark Twain once wrote, “…the person that had took a bull by the tail once had learnt sixty or seventy times as much as a person that hadn’t.” So too, our singular realities have taught me a lot about life, suffering, and following Jesus that I couldn’t have learned any other way. I’ve spent time thinking and praying about writing. It hasn’t made me more excited about the process of writing, but it did assure me that it needed to start happening.
It’s happening now, and it’s going to keep happening too, because as I’ve been dragging my feet and thinking about what this blog might look like, I’ve thought of many topics I’m excited to share about – topics like care-giving, suffering, and faith amidst them. There are so many others, too, all born from God’s faithfulness in this difficult adventure. I plan to write and post a couple times a month. Some of my entries will be short, others long, but all on matters pertinent and close to me. This blog is for you to see what’s happening in our singular life, specifically my life. It’s for me to share about what’s happening in my heart and mind as I care for Johanna. It’s for sharing what I’m learning through her lengthy suffering and mine.
This blog will serve another important purpose, too. The top of our website has a button that says, ‘Support’. That’s there because of the current financial needs of our situation. There is no expectation for financial support to be given as a part of reading this blog. But for those of you who are interested or feel led to do so, I invite you take a look at our Support page, and see what we need to keep going in the year to come. We receive support in so many ways, and this is just one of them.
We couldn’t live this singular life without the steadfast care and prayer from friends and family. I hope this blog will also open doors for me to engage more with others on various topics that are important so feel free to comment on what I share. I do hope to read those and look forward to responding.
Finally, as a reminder for those of you not as familiar with our story, where we’ve come from, and where we’ve been, I invite you to check out our “About Me” and ‘Links‘ pages. Both of those have more information about what my life has been like caring for Johanna and a little more about me too.
Slowly getting better at not dragging my feet,
Good for you starting this blog. It will help so many going through a similar thing. The sick and their caregivers are so often forgotten In a way it’s comforting that others understand. All the best to you and Johanna
Scott, thank you for sharing. I am particularly interested to follow along on your journey here. I have been diagnosed with MCAS, a dysautonomia, and chronic fatigue/ME. I feel lucky to miraculously still be working from home part time at a low stress job. I spend about 90% of my time in bed. My sweet husband works as a physical therapist then spends the rest of his time cooking for me with my few safe foods, taking care of me, and taking care of the rest of our responsibilities. It’s unbelievable how much he does (although, I’m sure you get that!). We are also Christians. I don’t know anyone else in a similar situation—young, Christian caretaker for a spouse with a severe chronic illness. Although we are grateful for the many blessings we experience, this life can be lonely, exhausting, and sometimes it feels like an uphill battle chasing down triggers that cause flares. I have some friends with similar health issues that I met online, but I wish John had more support+knew other caretakers. I look forward to hearing more from you, especially as it may shed light on similar feelings that John may have. My thoughts and prayers are with you and Johanna tonight.
I’m glad you found your way here! I hope my posts are encouraging to you two during this difficult time.
Hi Scott – Thank you for sharing your ongoing journey. I, too, suffer with MCAS, though not as severely as Johanna. I am an Orthodox Christian and also consider my relationship with Christ to be of primary importance. I have enjoyed reading your posts on CaringBridge and I’m sure I will enjoy your posts here as well.
I am thankful to follow this new blog. I cannot remember how I heard about Johanna’s journey with MCAS, however, I have been following Johanna’s caringbridge site for several years. I think of you both often and pray for you when the Lord brings you to mind. My 32 year old daughter also suffers from autoimmune issues, and has been diagnosed with idiopathic angioedema, idiopathic anaphylaxis and idiopathic urticaria. Thankfully to this point, hers is managed through a heavy dose of prescriptions, and she recently started Xolair shots with her immunologist.
Have you considered working for VIPKID Teacher? You have probably heard of this company. I have several friends who are teachers who are able to work from home after-hours, teaching English to young Chinese students through this Chinese company. My friends have been able to supplement their teacher’s salary, along with paying down their student loans!! These friends LOVE being teachers, but say that VIPKID is the most fun they have had as teachers.
I am praying that “the Father of mercies and God of all comfort” will comfort Johanna and you in this long affliction.
Fort Worth, Texas
Thanks for stopping by and for the great idea. I actually looked into something just like this! For now I have been able to tutor two students extremely part time (like four hours a week), and that is just about all I can handle amidst the busyness at the moment. Thanks for thinking of it though! I hope the Xolair (a fascinating medication) works well for your daughter. Our Dr. looked into it for Johanna, too!
I know someone who struggles with something very similar. She is totally isolated. Is she able to write Johanna a letter? She is very inspired by your story.
Hey Kristen, I sent you an email!